Lindsey describes her chronic illness journey and her experiences through her Colors of MS project in the questions below.
I can remember symptoms starting in high school – my friends use to joke that my talent was the ability to fall over when standing perfectly still. I’m in my late thirties now, and it took well over ten years to get to a diagnosis.
It wasn’t until after my second pregnancy that I really noticed that my balance, coordination, and tremors in my hands were getting worse. What really stopped me in my tracks was (what I now understand as a flare-up) when I would read a bedtime story to my daughters, and though I could read the words I was finding it hard to articulate.
I wish I knew how varied symptoms are from person to person, and that you can still live a vibrant and fulfilling life after your diagnosis. I think this would have eliminated a lot of the fear of the unknown in the beginning for me!
It has taught me to be very honest and transparent when it comes to my good days and bad days. My family is good at recognizing that I need rest after moments of increased stress or activity (some days that would be pulling off an event, others it would be taking a shower!).
Last year I attended an art opening, and I needed to use my cane (which was something I only need to do off and on, and I was feeling self-conscious). I remember spotting a dapper senior gentleman (he looked like the grandpa from the movie Up!), and we caught each others eyes and smiled – we had the same cane. He came over and we “clinked” canes and he complimented my style. It gave me a good chuckle!
CBD is something that I have found to be so helpful, even though it took me a while to find formulas that worked for my needs.
The first time I painted my MRI was really in a moment of grief. The imagery really frightened me, and I just locked myself in my studio and started painting in shades of red and gold. Afterwards, I felt so much better. It felt like the image was actually me, instead of this impersonal and clinical image.
It has become a calling, and has given me such a sense of purpose. I am humbled by the people I work with, and feel deeply responsible for holding their stories, making a safe and positive space for sharing, and creating something touching and personal. I’ve learned that I need to space out paintings, because at times it can feel like re-living diagnosis over and over, but it has become important for me to help people navigate that moment knowing that they’ll have a piece of meaningful art at the end of it. It really does make me smile!
Three years ago, I was focused on work environments that weren’t helpful in managing my symptoms – my job was always very fast-paced and stressful. Creating this kind of work has helped me step back, and gives me hope that I can create my own future where I can actively accommodate my day-to-day needs. I am truly grateful for that!
I have to actively work on managing my expectations every single day, and give myself a lot of grace. My fall-back mode is to take on too much work and become overwhelmed and tired, but managing my studio has taught me to really weigh the physical and emotional demand of creating original work. Something that is beyond helpful is that my clients also have multiple sclerosis – they understand how it is! I couldn’t ask for more compassionate people to be in partnership with.
Find your people! When I was first diagnosed I spent too much time in some online groups that were not positive, and it really took a toll on me. What Colors of MS has taught me is that there are so many people thriving with this diagnosis, and simply kicking ass at what they do.
I want to show a different side of diagnosis, one that is bright and hopeful. We all face a lot of the unknown and clinical aspects of managing our own symptoms, but there are other conversations to be had – we need stories of thriving, of overcoming adversity, and building community to show there are ways that we can come out stronger on the other side. I think art is the perfect conduit to get there!
I recently joined a local gallery in my hometown, Catherine Bede Gallery, and am proud to show original work that is separate from Colors of MS project – if you’d like to check it out!